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Uracyst, Heparin, Elmiron

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  • playethic
    Do try the rescue instill, INO

    Hi Sue

    Do go ... & don't be nervous! My experience may be because of frequency (I'm getting catheters on & off me several times a week, maybe that's a lot of irritation?) bu more importantly, I read in some study that something like 94% of people get immediate relief from rescue instills like the one I'm getting. Maybe I'm not one of them, but your odds are still very good, it seems... so definitely don't hold off on account of stories like mine, which it seems are atypical! And trying it is the only way you'll know.

    Let us know how you feel afterward.

    Also ...

    It sounds like Perocet gives you only partial pain coverage... I'm interested what else you have tried for pain? For this question, maybe answer it in the pain management forum. I've posted some there about pain options I've been trying.


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  • stevinks42

    HELP! i am having a lidocaine rescue yhis morning,i've never had one before,and have seen mixed reviews. i am very leary og getting it now. i've been in extreme pain for 8 weeks...what shold i do??? any ideas. i am on percocet, does not help as much as it sed to...

    thank you, sue

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  • pal2pah
    Update on heparin, lidocaine, sodium bicarb soln

    Hi all,
    Dr Parson's prescribed a premixed solution of heparin 50,000 U, lidocaine 200mg, and Tris (a buffer soln). It works 10x better than the heparin, lidocaine, sodium bicarb I used to mix at home. With his premixed solution the lidocaine does not precipitate out of solution and it can stay in my bladder for 4 hours at a time giving good relief during that time. These are made by a compounding pharmacy and shipped to my home. The copay on these are 1/5 the copay I was paying to mix it myself.
    The theory behind heparin is that it acts as a temporary GAG layer while Elmiron replaces the GAG layer.
    I've only had problems with Elmiron I'm waiting on pins and needles for the cystistat- I'm hoping hyaluronin will help me. Has anyone heard of an approval date for cystistat?

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  • playethic
    Hi back.

    Yes, you're right about Uracyst -- here's what it says on the box:
    'Sterile sodium chondroitin sulfate solution 2.0%. 4 x 20ml
    For replenishment of the glyosaminoglycan (GAG) layer in the urinary bladder'

    I'm fairly certain that I read a research study that showed that elmiron had much much better absorption into the body when delivered by instillation into the bladder instead of by pills. I can't find that article at the moment (I'll add it in later if I can find it). But this one said that when the intravesical delivery and oral delivery of elmiron are combined, reduction of symptoms was doubled.

    In science though there's always disagreement -- this study said the intravesical elmiron is no better than placebo.

    I'm only three days into the methadone experiment. Overall it's gone much better than I could have hoped. I may need it tweaked so I have a little more pain coverage. But that heavily stoned, severe somnolence feeling that so impaired my functioning on morphine I think seems very very much improved on methadone. Yay!
    Last edited by playethic; 03-02-2011, 06:29 PM.

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  • sailawaygrl
    The heparin, lido, sodium bi carb work to soothe your bladder. Heparin and elmiron in an instill work much the same way. The lidocaine numbs and the sodium bi carb is what makes the lido work better. These are more "rescue" instills for immediate relief. I guess that is why he is doing them while the other will work more slowly to build up your GAG layer in your bladder? Is that what uracyst is supposed to do? We don't have that here, so I don't know.
    I don't know if the instill is better for the elmiron or not, have they done a research study on that? Don't know since it seems that using elmiron in instills is newer, from the time a few years ago when there was a huge heparin recall. I agree with your Dr, just from what I have read on different forums, it seems that elmiron does help most people. I think a lot of people don't give it enough time, seems some Drs don't give it enough time either.
    I hope all of this helps you, keep us updated. How is the methadone doing for your pain?

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  • playethic
    started a topic Uracyst, Heparin, Elmiron

    Uracyst, Heparin, Elmiron

    I'm a bit confused by the possibly-overlapping threads (rescue instillations & this one) but I'll try here.

    I'm entering a one month trial (meaning me trying them, not clinical trials) with two different kinds of instillations.

    I'll be getting Uracyst by catheter into the bladder once a week for a month and once a month after that. It's expensive - including the pharmacy fill fee it ends up costing almost $ 75 per - - but is supposed to actually work on repairing the bladder (not just masking pain of symptoms). Patients have to pay for the medication, but the hospital pays for their labour. I am going to hunt online to see if I can find them any cheaper. There is an interesting discussion about Uracyst in the 'rescue instillations' forum that's worth reading. So that's once a week.

    Then twice a week I'll be getting heparin/lidocaine/sodium bicarbonate instillations. I think both lidocaine and sodium bicarbonate work to numb the pain in the bladder. Heparin is an anticoagulant, I'm not entirely clear how that fits as part of the instillation.

    Unrelated to instillations, but at the same time I have been prescribed Ranitidene - a pill to be taken twice a day. It is usually prescribed for stomach ulcers. Another member in the ICN forum had to go off of that medication in the past because it made her so drowsy. Because of that bit of info I'm deciding to postpone starting the Ranitidene for a week or two, because I just a few days ago switched from morphine to methadone (for pain managment) to try to find something that will make me less drowsy ... and I don't want to confuse which drug is causing which effect.

    The Uracyst was offered to me as an alternative to Elmiron. Like others in some of the other forum topics, I have read the research that 94% of Elmiron goes through the body with no absorption whatsoever, when the pill/oral version of Elmiron is taken (I read that the instillation version of Elmiron is muh more effective). I tried Elmiron a couple of years ago, for quite a long while, and couldn't tell any result. Here in BC it costs almost $ 1000 a year and PharmaCare doesn't think it's effective and so they will not allow that cost to count toward the 'ceiling' or Pharmacare deductible. That's a lot of money to be spending for no definite result. I asked the urologist about that last week -- he disagreed with research findings about Elmiron. He said that 70% of patients had improved symptoms when they correctly took Elmiron... he believes that some just quit after starting it for a month (the way he said it it sounded more anecdotal than evidence though, that patients only take it for a month?). Anyway these are contradictory, which makes decisions difficult.

    More confusing still, last week the urologist said that since money was an issue, the other option was to do Uracyst via the instillations instead of Elmiron. I asked if it would be significantly less effective, and he said not at all. I agreed and bought the first round of Uracyst at the pharmacy... but later did the math. It's not much of a savings Elmiron would cost me almost 1000/year; Uracyst will cost me about 1300 for 13 months. Nonetheless, I still would have tried it because I haven't tried Uracyst and have tried Elmiron.
    Last edited by playethic; 03-02-2011, 02:21 PM.